Living with chronic pain can be a real struggle. Editor Melissa Holmes finds out more about the challenges pain presents, while also learning more about how to cope
Before you judge a man, walk a mile in his shoes… So the saying goes. But how many people stop to think of that phrase when they see someone struggling to get coins out of their wallet, or having to search for a seat on a busy train? The person whose fingers are too painful to handle loose change, or the one who can’t stand up on public transport might be part of the 20 to 50% of adults in the UK who are living with chronic pain.
No one is immune from pain – even the rich and famous struggle with chronic pain, like musician and actor Lady Gaga who has fibromyalgia, and TV presenter Eamonn Holmes, whose mobility has been severely restricted by chronic back pain.
I myself have been living with ‘problem periods’ since I was 14. I was diagnosed with endometriosis at 28, which causes persistent pain all month long, plus flare ups at unexpected times which leave me stuck in bed, barely functioning… not to mention the mental health impact of the disease.
PAIN BELITTLED
My experience of waiting a long time for diagnosis is common with endometriosis, which affects around one in ten women and people assigned female at birth. The average wait for diagnosis is seven years. And, as with many pain conditions, medical trauma, gaslighting, and having your pain dismissed, diminished or belittled are recurring issues.
The unpredictability of how acutely the pain will strike, and when it will strike, are some of the worst things about living with chronic pain. Kyleigh Orlebar understands this all too well. She was diagnosed with psoriatic arthritis in 2014. “I got out of bed one morning with really bad pain in both wrists,” she explains. “I thought I must’ve slept in a bad position. But it never stopped hurting.”
INFLAMED JOINTS
Kyleigh went to her doctor, reporting persistent pain in her wrists and fingers. Via ultrasound, medics discovered every joint in Kyleigh’s fingers and thumbs was inflamed. “In a way, I was glad of the diagnosis,” she admits, “because there are medications that can help.”
With her feet and knees now affected too, Kyleigh uses a combination of in-shoe orthotics, splints and tape to manage her pain, along with medication. “As soon as I was diagnosed, I was popped onto Methotrexate, which is a form of chemotherapy,” she says. In tablet form, it didn’t help: “I remember being so desperate, just in so much pain. So they gave me Methotrexate to inject into my side every week, as well as giving me a steroid injection. All of a sudden, it was like this cloud lifted.”
Kyleigh remained on Methotrexate for five years until a common side effect – sickness – hit. She was forced to stop using the medication. “The sickness went away,” she says, “but of course the pain came back.”
She’s since tried a variety of medications, and has found that using ‘spoon theory’, along with her favourite forms of self-care, has been really helpful in managing her pain. Spoon theory involves imagining that you start the day with a limited number of ‘spoons’ of physical and mental energy, which will get used up throughout the day. It’s about pacing yourself and knowing your limits – if someone else can lift the kettle to make you a brew, ask them to do it, rather than using up one of your spoons. Kyleigh explains: “You need to know when to rest. If you haven’t got someone around to cook for you on a bad day, prepare a flare-up cupboard – things you can easily cook and eat, like noodles in a pot, or crisps.”
MENTALLY STRONG
Living with chronic pain (chronic generally being defined as acute, regular pain lasting longer than three months) is tough. Frustration, anger, fatigue and insomnia are just some of the mental and physical side effects.
Kyleigh has a naturally sunny disposition, but on her lowest days – like when she was unable to walk her daughter to school: “I couldn’t even hold her hand,” she says – a hot shower and a metaphorical kick up the backside have helped. “It’s been about getting my mental state in a strong enough position to be able to fight any demons,” reveals Kyleigh. “To keep on finding the beauty in life; finding things to be excited about is probably the hardest battle of any diagnosis.”
Kyleigh, who runs her own business as an artist, has had to change her ways of working to accommodate her shifting pain levels. She’s grateful for her family and husband, who’ll cook for her, bring heated blankets, and make her rest when she really needs to. She also has a “beautiful corner of Instagram” where her friendly followers check in on her frequently.
She told me: “Luckily with chronic pain, it’s never 100% every single day. You may get a really bad day, but you have got to remember – ‘this too will pass’.”